Fw: Woman With Lyme is a Voice for Invisible Disabilities

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This is exactly what I have experienced myself.

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-- Woman With Lyme is a Voice for Invisible Disabilitieshttp://www.myida.org Woman With Lyme is a Voice for Invisible Disabilities [sm]Copyright © 2005 The Invisible DisabilitiesSM AdvocateWritten By Wayne Connell, Founder and President of The InvisibleDisabilities [sm] Advocate www.MyIDA.orgFrom the time my wife, Sherri could talk and walk, she began to sing anddance! Life was a stage to her and anyone willing to watch became heraudience. She got her first horse at the age of 10 and spent many afternoonsriding, racing and even performing in shows. By 13, she had a job at a petstore. Later, she was a cheerleader, worked through high school and college,sang and danced in musicals, lifted weights, rode horses, was a model andobtained 3 college degrees. Although she had a history of a low immunesystem and often struggled with the flu, bronchitis, pneumonia, pain andparalysis, she still remained active. She was truly loved to work, she wasgoal-oriented and nothing was going to slow her down!At the age of 27, she suddenly lost the use of her extremities from the ribsdown, was hospitalized and was diagnosed with Progressive MultipleSclerosis. However, Sherri was not fearful, because she figured she wouldjust go home and rest for a couple of weeks and then return to work. Sure,the wheelchair was a new challenge, but she knew it was not going to hinderher career plans and love for singing. After all, no illness had ever kepther down before and this was certainly not going to stop her from achievingher goals!Through much physical therapy and fortitude, Sherri did regain most of theuse of her legs, even though it is still very difficult to stand or walk.Nevertheless, despite her utter determination, she never recovered from thedisabling, extreme fatigue, headaches, pain, weakness, exhaustion, nausea,cognitive impairments and dizziness that kept her from returning to work oreven function on her own. It was now all that she could do to get a showeror go to the doctor, as she remained unable to even care for her dailyneeds.Sherri found out in 1992 that she also had Late Chronic Lyme Disease from atick bite when she was 14. It all made sense, how her immune system wassuppressed, followed by such severe symptoms. Her doctor was amazed that sheis even still alive. In 1994, I asked Sherri to marry me.When Sherri was first diagnosed with the MS, she wrote a pamphlet to helpher friends better understand her new life and challenges. She thencontinued to write here and there over the years in her journal to help hercope with the changes. The biggest hurdle Sherri and I have struggled withis the fact that to others she does not look sick. This has caused us muchheartbreak, as people tend to only believe what they can see. We found thatwhen living with Invisible Disabilities, friends and family often do notunderstand the limitations because to them their loved one looks fine.Unfortunately, this often leads to those around people like my wife,claiming they must not be trying hard enough, they are lazy or they must beexaggerating. For Sherri, because she had always been a very goal-orientedextremely active person, these claims were more devastating than the illnessitself. After all, she would never willingly give up the activities in herlife that she loved and cherished! Still, because to others she looked okay,people often treated her like a malingerer.One day, I offered to post some of Sherri's writings from her journal on thenet. I thought it would be a great way to save her the energy trying toexplain what she was going through to loved ones and to people she met. Muchto our surprise, the message spread like wildfire, far beyond just ourfriends and family! It did not take long for us to discover how vital thismessage was to millions of Americans who live with various chronic long-termconditions.Later, I compiled some of her writings and had it printed into a booklettitled, But You LOOK Good! A Guide to Understanding and Encouraging PeopleLiving With Chronic Illness and Pain. I offer it without profit through thewebsite and have sold many copies across the globe. In 2004, I founded thewebsite, The Invisible Disabilities Advocate ( www.MyIDA.org ) as a non-profitorganization and have given seminars to our community. Through word ofmouth, the website became a worldwide outreach, as we now get over 120,000hits a month.From the very beginning, we have received notes from people telling us howmuch the site had been an encouragement and comfort. What amazed Sherri wasthat she had thought she was the only one going through these strains inrelationships. Apparently, she was wrong! Not only was she not alone, but wereceived an overwhelming number of visitors who told us, "You have saidexactly what I have been trying to say!" or "Now I know I am not alone!" Onelady wrote, "Terrific insights and communicated clearly...my husband said itfinally opened his eyes to what I had been trying to say all these years.Thanks." Another even told us her husband got down on his knees and askedfor her forgiveness after he read the booklet!Sherri and I have a passion to send a message to the world. These people arenot lazy malingerers! They are people who have had dreams and goals stolenby illness. We want people to see the determination in those living withdebilitating conditions. We long to stand on the mountain top to shout tothem, "What courage! What strength! What perseverance! We commend you! Youcould give up, but you rise to fight! You are heroes!" Sherri and I want tolet everyone know that even though the mountains may seem overwhelming,those living with illness and pain are still climbing!Sherri continues to mourn the loss of her singing, dancing and businesscareer. She even mourns the ability to do things that others take forgranted: like cooking, shopping and cleaning. Instead of a life on stage orclimbing the ladder of a corporation, Sherri struggles just to get dressed,take a shower or go to the doctor. Nevertheless, I believe we are grasping agreater purpose in our lives- to be a voice for others living with InvisibleDisabilities.Visit The Invisible DisabilitiesSM Advocate: www.MyIDA.org Learn More About the booklet, But You LOOK Good! A Guide to Understandingand Encouraging People Living With Chronic Illness and Pain:www.MyIDA.org/booklet.htmCopyright © 2005 The Invisible DisabilitiesSM Advocate